Estelle Jobson is a patient engagement specialist, researcher coordinator, and women’s health advocate, currently serving as Patient Engagement and Researcher Coordinator at FSHD Europe. Her work focuses on strengthening collaboration between patients and researchers and advancing patient-centered approaches in health research and innovation.
She is a EUPATI Fellow and has prior experience at the Drugs for Neglected Diseases initiative (DNDi). As a patient expert in endometriosis, she brings lived experience into research, policy, and advisory activities to improve inclusivity and representation in health systems.
Ms. Jobson is a founding patient partner of the PartnerREC project at Geneva University Hospitals and serves on Boehringer Ingelheim’s Global Advisory Board on Representativity in R&D and trials. She is also a member of the Patient Advisory Group of GREG, contributing to the development of tools and guidance for real-world evidence generation and decision-making in Europe.